The next normal: sharing personal health data to fight COVID-19 and beyond

Rachel Rowson, head of health innovation, ENGINE MHP, examines the findings of a recent survey surrounding public confidence in sharing personal data with major technology companies, and what it means for innovators batting COVID-19, and beyond. 

In April, at the beginning of the COVID crisis, the health secretary Matt Hancock issued a six-month order for the NHS to share confidential patient data with any relevant organisation, providing the purpose of doing so is solely for “research, protecting public health, providing healthcare services to the public and monitoring and managing the COVID-19 outbreak and incidents of exposure.” 

Health data is a key ingredient in developing medical technologies and ensuring that companies can respond to the needs of the day. The COVID pandemic has catapulted the med tech industry to the forefront of the fight. Demand for diagnostic tests, ventilators, PPE, other medical supplies, and reliable supply chains has rocketed. But the use of personal health data by the Government and NHS, not to mention diagnostic and other private companies, is a contentious area.  With this in mind, MHP Health commissioned Savanta ComRes to poll members of the public in mid-June 2020 to help us understand their comfort with sharing their health data. 

The public feel uncomfortable sharing their data with big technology companies

The public are most likely to say they would feel uncomfortable sharing their health data with ‘big technology companies’ (38%), out of all the options tested.  This is not surprising given low levels of trust in technology companies appropriately managing data in healthcare and other sectors.  Building trust and being transparent about data usage will be important in increasing the public’s comfort with sharing their health data with these organisations. 

The data big technology companies already collect from citizens is increasingly important in the fight against COVID-19. Telecommunications data, including GPS, will be essential in making contact tracing a success and in informing local lockdown strategies. Technology companies who have search engines are likely to hold more data on the social determinants of health of an individual than is captured in conventional health records. This could help to identify populations most at risk of having serious health problems as a result of COVID-19.  As the public becomes aware that big technology companies are the originator of a new type of health data, attitudes may change about their role in the collection and analysis of health data.

But the public are coming around to sharing their data with diagnostic companies

There has been a positive upswing with one quarter (25%) of the public saying they are more comfortable sharing their health data with diagnostic companies since the outbreak. Going some way to explain this may be that almost three fifths of people (59%) said that ‘improving NHS structures and services’ was the purpose they feel most comfortable sharing their data for. 

Diagnostics has become a central part of the fight against COVID-19 and the general public are aware of the efforts that have been made to develop diagnostic tests and to make them available nation-wide. This increase in profile for the diagnostics industry and clear societal benefit to activity may have helped to reassure the public about the sharing of their health data.

Will data sharing be the next normal?

There is a critical communications job that needs to be done in winning the hearts and minds of the public regarding the benefit of their health data being used to inform health strategies. 

The diagnostics industry needs to be open and transparent about how data is used and build on the public interest in the development of tests for COVID-19. 

For technology companies who don’t necessarily work in medical ethics and research regulation exclusively, embracing the Department of Health and Social Care’s Code of conduct for data-driven health and care technology and communicating about how they are working within the principles could help to increase public understanding and confidence in using their health data.